I have decided to start a new thread and see where it goes. I know that there are some excellent recent individual threads that address recurring prostate cancer (PC), but they are interspersed with many wonderful heartfelt personal messages making it more difficult to get to the treatment facts. I would like this thread to contain only hard hitting facts from personal experiences and reliable research.

I am motivated to do this based on the number of recent posts from members who have experienced recurring cancer. This is a fate that any of us with PC could face in the future and it breaks my heart to read these stories. I hope that this thread will ultimately present some hard evidence of treatment options that are available to patients experiencing recurring PC that they may not be aware of.

I have a great concern that some patients may not be getting the best advice from their doctors as to all of the possible treatments available to them that could be life saving. Also, this website is a great resource to those that are not yet members. Often they join after reading some of the invaluable information that we post here from our personal experiences.

The key to a potential cure and hopefully avoiding recurring cancer after treatment is getting some form of treatment as early as possible (i.e., as soon after diagnosis as possible). Watchful waiting is a fool's game!

Recurring PC After Surgery

I believe there are cases where some patients can get radiation treatment alone or combined with hormone treatment, even if they are in a more advanced stage of recurring cancer. Hormone treatment will slow down the cancer, but will not cure it. Therefore, in order to potentially cure PC if it recurs after surgery, the only real hope is some form of radiation treatment. I implore everyone who is in this situation, to leave no stone unturned in getting as many opinions from the top PC medical institutions and doctors in the U.S. It ultimately could be the difference between surviving and not surviving this dreaded disease.

From my research, I believe there is evidence that some patients treated with radiation (rather than surgury as their initial treatment of choice) could prevent recurring cancer because surgery might miss or be unable to remove all existing cancer in the margins surrounding the prostate. Therefore, there may be some advantage to radiation over surgery depending on the circumstances (e.g., age and early stage of PC). Keep in mind that the percentage of PC patients who have recurring PC sometime after surgery is not insignificant. "According to the American Cancer Society, 40 percent of men have local recurrence of the disease after surgery, and 11 percent are at high-risk of the recurrent disease spreading to other organs."

John Hopkins Study of Recurring PC After Surgery

If Prostate Cancer Comes Back, Who Needs Aggressive Treatment?

If a man develops an elevated PSA level (more than 0.2) after surgery, he is considered to have recurrent disease — and “recurrence” is a dreaded word for men who have undergone treatment for prostate cancer. But a new Brady study shows that not all recurrence, like not all cancer, is equal, and that not all men need aggressive treatment— or any treatment right away — if cancer comes back.

Brady investigators have developed reference tables for physicians and patients that help determine which men are going to be in trouble and in need of more aggressive treatment, and which men have a slow-growing cancer that may not cause trouble for years, are relatively safe and can be carefully watched.

PSA Doubling Predicts Prostate Cancer Recurrence (April 19, 2007)

A detectable level of prostate-specific antigen (PSA) is the first indicator of recurrent prostate cancer after radical prostatectomy. In a new Mayo Clinic study, the concept of PSA doubling time (DT) is found to be a reliable tool to distinguish which patients have prolonged innocuous PSA levels after therapy from those who are at great risk for disease recurrence and death from prostate cancer. Doubling time is defined as the duration for PSA levels in the blood to increase by 100 percent.

Mayo's study, published in the April issue of Mayo Clinic Proceedings, concludes that patients with a PSA doubling time of less than three months after therapy are at imminent risk of death from prostate cancer. Patients with a doubling time of three to 12 months are at a significant risk for the development of systematic disease and cancer-specific death.

According to the authors, the new findings should prompt physicians whose patients have doubling times of less than one year to treat them with systematic therapies. Patients with PSA doubling times of one to 10 years are more likely to have a local rather than systematic recurrence, and patients with a PSA doubling time of greater than 10 years are at a low risk of recurrence.

A great majority of surgeons will not do surgery on men who have already had radiation treatment. However, if the cancer has not spread beyond the prostate, some surgeons will perform surgery to remove the prostate. This is why it is so important not to be defeated when one doctor says "no" as there may well be some great doctors elsewhere who will say "yes" if you seek them out. It can make the difference between ultimately surviving and not surviving prostate cancer.

The following website somewhat dispells the belief that one cannot have the prostate surgically removed after radiation treatment--it is well worth reading.

"Frequently Urologists will tell a patient that they cannot have surgery following failed radiation of any kind. They use this to convince a patient that they have better options following failure if they have surgery. They can and are very convincing about this and it is commonly accepted by the patient that it is true. However it is not true and salvage surgery can be done following failed radiation. Some Urologists may not have the skills to do it and therefore will talk against it. But there are enough papers and studies and discussions at the AUA meetings that every Urologists should know that it is possible."

Where do we go from here

I want to continue to do research and add to my thread here--this is a work in progress. I hope that other posters to this thread will only post hard core facts from their own treatment experiences with recurring cancer and from their own research, hopefully from reliable sources. We need to do as much as possible for those who experience recurring PC so that they can direct their attention to getting the best treatments and doctors available in the U.S., if they are willing and can afford to travel to get the best. I hope I have inspired other members to contribute to this thread. I always welcome any member to challenge anything I have posted on this website and I will correct it if found to be misleading or in error.

Terrific posting!! I visit my cancer "team" tomorrow. Besides the information that has been tested - positive margins, gleason 3+4, post surgical PSA 0.01 - I want all the information I can prior to talking to them. I just printed out that article you referenced, and will have it with me. My thoughts are now that I'll wait and see what my PSA is in three months, etc. and make decisions on further threatment if things change. According to Dr. Walsh's book, with my gleason score - 7 - it won't change my survival statistics to delay any radiation unless I get my PSA rising above .2, or a high double rate. I'll put another posting up late tomorrow about what my doctors tell me. (Again, another shameless plug for Virginia Mason in Seattle. They have a prostate cancer clinic director who sets patients up with a board of 4 specialists in one day to review their specific treatment options. I cringe when I read about forum members who have had to search out these on their own. Expect for the fact that my initial biopsy showed much less cancer that what was there, I have been very pleased.)

I had my appointments with my cancer team today - surgeon, radilogist, oncologist, sexual function specialists. Nothing decided today - another PSA test in three months, and then return to visit the surgeon. For my stage - t3a and Gleason 7 - and pathology report, there's about a 60/40 chance of reoccurance. Thus, the decision, radiation soon, or wait until a reoccurance. This seems to be just as controversial and confusing as selecting my original treatment. A recently released study shows that early radiation will delay the reoccurance of PSA, but the incidence of advanced metastatis was insignificant. For right now, it's time to just get healthy, and hope the PSA stays very low.

In discussion with the oncologist, she mentioned some interesting ongoing studies. Taking selenium is one; I've been taking a men's vitamin for awhile, but decided to add a 200 mcg selenium supplement - my brother has really pushed that. Another actually deals with pomegranete juice. I bought some a couple of weeks ago, but may drink a bit more - tastes bad, but not so bad with lemonaide, however, it's expensive. She also mentioned that a study of chemotherapy has just ended, with the results due back in a few years. It makes sense, since any cancer cells still there are not readily locatable.

All in all, while things look good for me now, there very well be more decisions in the future. Now it's time to keep up the research and pray/hope that my PSA stays down. Who knows what kind of treatment will be around the corner. Keep the information coming.PSA 4.7 (up from 3.2 one year ago)

thanks for your postings--this is exactly the kind of feedback i am looking for relating to recurring PC or the possibility thereof. getting information on PSA readings after treatment, the extent of cancer found after treatment, where it is located if possible and the types of treatment are very important. i am also especially interested cases where radiation therapy is possible either alone or with hormone therapy for recurring cancer and also for initial treatment where the Gleason score has gone beyond 7. i think there is a great need for this information because having to deal with recurring PC or more advanced cases is a much tougher situation than dealing with our initial treatment if we are in an earlier stage of PC. we will be looking for more information from you as you go forward. best of luck to you.

I was just reading in a newsletter I get following my Proton treatment. They state that Loma Linda is having success with Salvage Radiation following failed surgery. Another option to consider.Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.

I seem to recall that Loma Linda was doing salvage radiation surgery and wanted to post something, but couldn't find anything definitive. Can you give us more details from the newsletter or quote from it. Again, exactly the kind of helpful information we need here! Many thanks!

Hi Dave,I recently had asuccesful robotic prostatectomy and am now focused on threat of recurrence. Your posting is interesting, especially the risk factors of time of recurrence, doubling time, etc. Could you tell me what is the threshhold of measuring doubling time. In other words, my recent PSA was <.01. If it should rise to 0.02, is that a doubling, or does it have to be higher before you start measuring doubling time.

You didn't give any of your statistics! Why are you worrying about recurring cancer after surgery? Unless you had positive margins after surgery, you have no reason to be concerned so soon after surgery. You should focus on your recovery and think positively about the future until you have definitive evidence of recurring cancer. I don't know that the PSA doubling rule applies after surgery. If periodic PSA tests following surgery indicate that the PSA is continuing to rise, then there should be concern about recurring cancer. I have found two websites that might offer you some more information to help answer your questions and concerns.

Quoted from Johns Hopkins"When PSA Goes Up After SurgeryIs it Local Recurrence? Distant Metastasis? Would Radiation Help?"

http://urology.jhu.edu/newsletter/prostate_cancer411.php

"PSA is a good marker for the success of prostate cancer surgery. If we remove a patient's prostate and all of the cancer was inside, then the PSA should go to very low levels. If some cancer cells had escaped from the prostate, then the PSA will remain measurable or become measurable and continue to rise after a few years. As a practical matter, PSA readings over 0.5 usually indicate residual or recurrent cancer following radiation or surgery." http://www.malecare.com/prostate-cancer_77.htm

You have to remember that ultra sensitive PSA tests are very touchy things. My .01 may be .03 tomorrow, and .02 in a few days. What one of my doctors mentioned yesterday, was to look if it rose to .05, and that would be significant. A lot of the information I've read says that reoccurance is when it reaches .2 The main thing is not to get upset if a 0 goes to .01, etc...

Hi Dave! What I am concerned about is the possibility of a cancer lifestyle. Of course, we were new to the subject starting last August 06, but I was greatly encouraged by the studies regarding diet and PCa. Most notable is the real correlation between dairy fat and red meat and cancer of the prostate. In fact, the studies are most definitive with prostate cancer as opposed to other cancers. In addition, healthy thinking (thus eliminating obsessive worry, guilt and fear), and moderate exercise have also been shown to have positive effects (don't make me drag out the studies, or I promise I will find them). For example, studies have shown that women who lift weights have a much lower incidence of breast cancer. Now why is that? Is it possible that exercise reduces the effects of free-radicals on our cells? And most of us eat the "easy way" to satiation, instead of the most nutritious way. We just don't have the energy, and a big reason is that we eat so terribly and move so little. This contributes to depression. It can be a vicious cycle. I know from my own life. It is my firm belief that a diet low in dairy fat and processed food, along with a regular meditative excercise (such as yoga or tai chi) will provide the insurance policy that none of us can pay for. I know old habits die hard, so figuring out why one chooses to worry about death instead of implementing a way to live is part of the lesson plan. It is an exciting thought that we can reduce the chances of re-occurence, don't you think? And thank you for this great thread!

What a tremendous posting you made! I concur 1000% with what you say. The power of positive thinking and positive living habits can be so beneficial to good health and good body chemistry (i.e., preventive medicine). It looks like your husband is doing great soon after surgery, especially having to also endure two hernia repairs. Getting PC at a much younger age is especially tough and I love to hear success stories like this. Best of luck to both of you.

A breast cancer drug could help men with prostate cancer avoid some dangerous side effects of treatment, a study shows. Toremifene may help protect men from heart disease and bone fractures, according to an interim analysis of 200 men in a trial of 1,392 patients. about one-third of the 2 million Americans with prostate cancer are treated with a therapy that blocks testosterone, which can feed tumors, says Matthew Smith, associate professor at Massachusetts General Hospital Cancer Center. Hormone-deprivation therapy is a mainstay of treatment for men in advanced stages of the disease and is sometimes given to men with early tumors as well, Smith says. He presented his research here Friday at the Prostate Cancer Symposium. The therapy doesn't cure cancer, but it can slow it down and ease pain. Doctors have grown concerned about the therapy's side effects, however. The treatments make men put on weight, gain fat and lose muscle, says Smith, the paper's lead author. In September, Smith published a paper showing that hormone deprivation also raises the risk of diabetes and heart disease. Another study presented Saturday confirmed those findings: Men over 65 on hormone-deprivation medications are more likely to die from heart disease. Toremifene, a selective estrogen receptor modulator similar to tamoxifen, is approved to treat advanced breast cancer. Doctors also are testing it as a way to prevent prostate cancer in men with precancerous growths. In this study, men with advanced cancer who took hormone-deprivation therapy were randomly assigned either toremifene or a sugar pill for two years. Patients who took toremifene gained bone density. Those on placebos lost bone."

Hi Dave,Thanks for the pointer to the interesting article on post-surgery recurrence. In my case, there was no evidence of spread beyond the prostate, but the cancer was deemed very aggressive ( Gleason score of 4 + 5), and present in both lobes. I was told that recurrence is probably at a 50% probability and to simply monitor PSA before starting either hormone or chemo. So far my post-surgery using ultra-sensitive test (one reading so far) is <.01, i.e. undetectable. I was simply wondering what I am looking for to know when and if PC has recurred.

Now that you have given us some statistics, I can now understand your concern about potential recurring PC. Let's hope and pray that this does not happen to you. Try not to think about it. All of us have to realize that there is a possibility of recurring PC after treatment. We all need to think positively after treatment. Good Luck!

Could not find the Newsletter that mentioned the Proton Beam Salvage Treatments, but I did find 2 testimonials on the www.protonbob.com website. I'll paste them here and they also can be found on the website under Testimonials.

I'll start a new topic also as this might be missed.

David Leighton - Foresthill, California

When David Leighton’s radical prostatectomy failed, he chose Proton treatment to go after the cancer cells the surgery had missed. That was 5 years ago. Today things are looking great! Following David’s brief testimonial, he relates an inspirational story about his brave friend, “TC.”

Proud to be aboard the Brotherhood. This is an outstanding program. I am a solid believer in the "Proton," and your organization is right on track getting the message out to all those in need. Keep up the good work! Early detection and Proton treatment is the way to go!

10-17-95, the prostate biopsy came back hot in the upper left quadrant of the prostate.

Thanks so much, Bob for having me aboard. Looking forward to communicating with all members!

Testimonial 2

Steven Hodgdon - Hatley, WI

Like many of our members, Steve’s initial treatment for prostate cancer was surgery. When his cancer returned, he chose proton therapy for salvage treatment.

Following is an email sent to me by Steven Hodgdon, a former surgery patient whose cancer had returned. He chose proton therapy at Loma Linda for salvage treatment.

Hello Bob,

I just finished reading the Proton Bob newsletter from June where you were speaking at Loma Linda's Wed. meeting. I was a post prostate surgery guest at Loma Linda starting in January 2006 and finishing up there on March 10th.

Four years after having my prostate removed my psa began to climb and when it reached 0.20 my urologist advised traditional radiation as the next step. I wasn't too keen on getting that done after hearing about the possible damage to good tissues that conventional radiation can have. After pressing my oncology radiation doctor about other treatments he then told me about proton radiation treatment at Loma Linda and mentioned that he had graduated from there some time ago and that his son now is going to Loma Linda. He said that if he were me and could afford the time and expenses, he would go to Loma Linda. After this fine recommendation, and some research and correspondence with Loma Linda the decision was made to go.

The experience as others have testified to, is almost indescribable. Being treated as a guest and with respect at every turn, the opportunity to socialize with other guests, and the professionalism by all the staff is overwhelming. My wife and I came home with many new friends and a very positive outlook on my recovery. Dr. Rossi is indeed an expert in proton treatments and is confident in his practice.

I had my first follow-up treatment after two months (standard for post surgery treatment), and am so elated to say that my PSA was non-detectable. Also, my friend Rex from N.M. who had post-surgery proton treatment at the same time, reported to me that he had the same results.

So anyone out there with ‘returning’ prostate cancer absolutely needs to check out Loma Linda. Bob, when I first contacted you to join your group I was surprised to get a personal e-mail back from you outlining the success of other Proton Bob members who had post-sugery proton treatment. That little note of yours really helped build up my hopes. Thank you. I hope this makes your testimonial pages so that others having similar cases will know that proton treatments for post-surgery returning prostate cancer really are effective. Best Regards, Steven Hodgdon, Hatley, WI. Keep up the great work!”

Wonderful post on Loma Linda and salvage proton radiation after failed surgery and recurring PC. I don't know if this would apply to everyone with failed surgery, but I implore all of those with failed surgery to get 2nd or even 3rd opinions from top radiation oncologists (preferably proton radiation which is safer than photon or x-ray radiation). As I have said before, sometimes the salvage treatment may consist of a combination of proton and x-ray radiation to get all of the cancer depending on the location and stage. I know that Loma Linda does both. I don't know if the other major proton radiation centers (e.g., Mass General (MGH) in Boston, University of Florida in Jacksonville and MD Anderson in Houston) will do salvage radiation therapy. I hope that we can find that out eventually. I assume that the stage of recurring cancer has a lot to do with whether or not salvage radiation is a choice. The radiation will hopefully kill any remaining cancer whereas hormone therapy will only slow it down for awhile and the side effects are not very pleasant (there is an earlier post above about hormone treatment and the likely negative side effects).

You are correct as far as the seriousness of the reoccurence. With Protons the area would have to be a Targetable area. They do both Proton and Photon if there is any question about the extent of the spread.

Each Patient is unique and a consultation with a knowledgeable Urologist would be the best way to go. Knowledgeable is the Key Word. Some are not even aware of all the possibilities. Sad to say.

Time is the most important issue with a reoccurence. Catching it quickly is the key ,whether it is Salvage Treatment or your 1st treatment.

Ken

Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.

Dave - here I am. I talked with Loma Linda on Thurs. After furnishing the rest of Don's records to them I should be getting a call on Thurs or Fri. Mila was extremely nice and sent out info to us right away. The biggest issue is the "distant nodes" (out of the pelvic area) that the cancer is in. I don't know any more than this at the moment but I promise to let you know. This is difficult. My next task is this: if they say it can be done...will Don agree.

Thanks for keeping after me - giving me the call out in such a kind way. You are pure gold.

At long last I am hearing from you! I think of you and Don often and have been wondering what progress you and Don have been making in pursuing the continuing treatment needed for him because of the most unfortunate failed surgery. I am glad to hear that you are communicating with Loma Linda--it gives you hope. Not being a doctor, I have no idea about the cancer in the distant nodes. I don't know how often that happens. Usually the nodes in the pelvic area are removed at the time of prostate surgery. If they can identify where those distant nodes are, why couldn't they be removed surgically. In many other types of cancer operations, it is common to remove nodes elsewhere in the body. Has this possibility been discussed with any of your doctors? I would hope that Don would agree to any further treatment that gives him a good chance of wiping out the remaining cancer. I know it has not been easy for both of you, but don't give up the fight. Please keep us informed of the progress you are making. What a wonderful wife Don has! Fighting for her man all the way! God Bless!

Dave - still waiting to hear...they said 3 days. I'm sitting on the phone and it's not comfortable.

Update: yesterday afternoon late (I'm in FL - Loma Linda in CA) got a call from LL. Spoke to Mila - she asked Don some questions regarding his present side effects from the Lupron & general health. She said the doctor will review his records next (I guess she Pre-reviews them) and we will be getting a call.

Dave & all who come here - I just got off the phone with Mila from Loma Linda. The doctor reviewed Don's records and due to the distant lymph node spread (outside of local pelvic region) he is not a candidate for proton beam therapy. They are sorry.

I'll need to tell him when he gets back. I hate to cause he was doing ok before I got him to consider this - he's not a fan of radiation. Years ago a family member had radiation and well, it wasn't a good outcome. That stuck in his mind. That was then, I told him, things have changed. He thought about it for a while and said ok - let's give it a try.

This is just another side of pc - some don't have too many options. Lest you think I won't continue to try...mark my words, I will. But not today.

Dear Dave ~ Taking *MyMan under your wing was a generous gift you gave to them... we never know the answer... until we ask!You are truly a caring man… giving from your heart ~ sharing your knowledge and Helping all of us ~ to Help Ourselves. Thank you!

Hi ~ Susan & Don,

Thinking of You!

We respect you for looking under any stone that may have an answer….You did right to pursue the prospect of answers from Loma Linda.It’s not the answer we wanted to hear…. But if you hadn’t looked into it… you would never have known.There’s always 3 “possible” answers and you don’t know unless you ask. The answers being: 1) Yes2) No3) Maybe

You had to travel this way….You’ve learned a lot and there’s no doubt in my mind that during this research travel… other paths have opened up and you will research them now.

Our thoughts and prayers surround you!Continue to reach out because we will always be here!Special Hugs to you both!